After a random referral from a friend who embraces ‘alternative therapies’, I have begun a new kind of treatment with the aim of alleviating some of the symptoms of my Fibromyalgia. This is called hyperbaric oxygen therapy and while I don’t believe in Fibromyalgia Cures, there is a chance that this new therapy could provide some relief.
What Is Hyperbaric Oxygen Therapy (HBOT)?
My aim with my blog about Fibromyalgia is not to repeat stuff which you can find with ease on other websites. So I’ll explain it in my words, then refer you to other medical and treatment sites who understand the detail far better than me! Hyperbaric Oxygen Therapy aims to help enhance the body’s natural healing system by breathing in 100% Oxygen in a pressurised environment.
Using nautical measures such as ‘going down to 24 feet’ or ‘coming back up’ at the end of treatment, this refers to the pressure of the room (also known as a Chambre) you have your treatment in. Having done a bit of research and spoken to some others locally who are using it, each person has different results. Some can claim to have complete eradication of painful symptoms, others may just find an alleviation in Fibro Fog (or Brain Fog, if you get this effect with other condition).
Initially I have to have an hour a day, 5 days a week for 4 weeks. Then I may need to return once a week thereafter. As this treatment is pretty new in the grand scheme of medicine, it’s not available on the NHS, but a charity/non-profit closer to me has pretty low prices and my parents helped out to enable me to try this.
My HBOT Diary
I was told to keep a diary so I can monitor effects (or none) in the early days. Other patients there have told me they didn’t really notice anything until week 2. Given I’m not impatient, I’m happy to try this with an open mind. Breathing oxygen isn’t bad, after all we do it all day every day, with varying success depending on the air quality you have!
As I’m supposed to keep a diary, where better than here on my website? I might even remember to do it daily (hopefully).
Day 1 and 2
Yesterday was just weird. Fitted with a gas mask and put into a small metal dome (ok you can fit 4 people in it comfortably… if you don’t like small spaces like me, then that doesn’t sound comfortable). I had my session at the start of the day, but it was day 1 so I didn’t notice anything.
Day 2, however, I managed to delay taking a dose of meds by a couple of hours. The ‘depth’ was 24 feet and after a stressful day at work, it made me quite sleepy. I’m wide awake and in pain at home now, so I’m about to have my dose of medication, but forcing me to relax for an hour is still of value. This is only day 2, so I have to remind myself I may not notice anything worthwhile until sometime next week. That’s ok, I’ve tried so many different things in the past, this is just ‘another thing’ until I feel it’s of value.
The centre is fairly friendly, though the gentleman there today presumed I’d been a lot before, rather than the hopeless newbie I am, in pain and stressed and unable to think. He got me settled eventually. It’s a long hour you spend in there, so Kindle and Phone were very much needed.
Today was a non-working day. Unfortunately I was in bed about 12 hours so ended up on a 3pm treatment session with ‘morning’ Fibro Fog. Not great. And my pain was dreadful. So I didn’t arrive in the best state. It was unusually warm and there were 4 others in the hyperbaric chamber with me. So I had to focus on reading on my Kindle to ignore feeling claustrophobic. I wasn’t fogged after the session – the increased Oxygen should alleviate brain fog. But I was in a lot of head pain and forgot to take my medpac. It’s still early days.
Apart from the evilness surrounding being in town for 9am (mornings are very painful, early mornings especially so), this session was the first time I actally felt properly relaxed. It didn’t help my pain, but I wasn’t half as fogged up. I’m starting to see how this might be a benefit, but I remembered that another patient said they didn’t see any results until sometime in week 2, so I’m hoping I have a better idea whether this will be helpful for me by the end of next week. Trouble is, there are a few really stressful situations I need to handle next week so I just hope the benefit gained isn’t overshadowed by pain due to stress, but we’ll see!
Day 5 – First Noticeable Difference
So I went into the hyperbaric chamber today in full neck spasm. A combination of Monday being weekend and weekend being high pain anyway. Once the depth was adjusted I sat back to read a book on my Kindle. I didn’t wince once during my time in there and actually relaxed. Now I’m out, my shoulders and neck are bad, but are not as bad as before I went in. Being balanced I did take medication a couple of hours ago – but they haven’t been working well recently. My head is a wee bit clearer and have been able to chat with my other half (more than normal I mean). I don’t want to get my hopes up, but today’s oxygen therapy session appears to have given positive, albeit slight, improvements.
Day 6 – A reduction in medication
After today’s session I found an interesting occurrance. I only took 3 huge doses of medication, rather than the usual 4. And I didn’t take any of my strongest when-all-else-fails tablets. A first in a very long time. Life is complicated, so it’s hard to attribute this purely to the Oxygen Therapy. But I’m too rational for placebo (or I tell myself that anyway) so it must be at least contributing towards today’s success.
Day 7 – A Stressful Day
At work, it was really hard. I already struggle to balance Fibromyalgia and Stress, and I had to work until 9pm last night. So I was shattered when I woke up. I have some pretty hard deadlines this week (and they’re pretty much non-negotiable deadlines too), so today when the pressure rose, so did my need for pain medication. I’ve only had 2 big doses today but I will need another one, and I have had one of my strongest tablets (a drug called Nefopam). I hope to not need 2 doses. If I can manage it then that will be just 3 doses again, even on a stressful day. Step-by-Step.
Day 8/9 – A Stressful Day
I have a feeling I missed a day, I’m pretty sure I’ve done 9/19 sessions now. One of these days was a huge, complex and stressful project launch. I had to get up at 6:15am and I failed to get an adequate amount of sleep. My sleeping tablets didn’t work, so even more than normal, my mantra that Rest Is Not Restful was very apt. However, I was so stressed by the time my therapy came around that I needed it. Cut off from the world and breathing pure oxygen was surprisingly relaxing. My pain has been awful since Day 9, but that’s more to do with the project stress and the lack of sleep I think. I hope to be more on top of things by my next session.
This week, four out of five days I only took 3 large doses of medication rather than four. I hope this is a sign of things to come.
Day 10 – ‘Diving Deeper’
Today they ‘took me down’ (as it’s called) to 33ft in the Hyperbaric Chamber. This means the oxygen is delivered at a higher pressure, which (if I’ve understood it correctly) delivers it to a greater effect. Had to start the day early as my wife had to be in work. I went in with a really bad headache and neck pain. I came out just feeling very achy, a little bit sleepy but a lot more relaxed. I think my next couple of ‘dives’ (another in-house term) at 33ft, so let’s see if I react positively or whether it wipes me out. Still feeling positive about this treatment.
Today has been awful. I think I slept really badly, despite being in bed for 8 hours. I had ‘input overload’ due to multiple demands on my attention and either last night or at some point in the day I pulled something in my neck. I was really stressed when I went to our MS Therapy Centre for my treatment. Although it had negligible effect on my pain levels, it did calm me down, so I was shattered afterwards, but I was tired rather than stressed. That alone is a good thing, although I’m looking forward now to not having to do it every day.
Day 12 – A Backwards Step
With Chronic Pain, understanding the causal relationship between what is going on in life and your pain levels is really hard. So on the one hand, people who have gone through the Hyperbaric Oxygen Therapy treatment say that week 3 may see some backwards steps. On the other hand, the end of last week (and work this week) has been so stressful that it would negatively impact my felt pain anyway. From day 12, my pain has been noticeably higher and I had 4 doses of medication again today. But whether that’s just a ‘normal fluctation’ in the effectiveness of the Chamber, or just a byproduct of how manic life is right now, I don’t really know. I still have 7 or 8 more treatments so I hope I can re-find the benefits to Fibromyalgia I was enjoying last week.
Days 13 and 14
I haven’t updated this the last few days because my hand pain came back – mostly due to the type of work I’ve been doing this week. I managed to undo most of the ‘backwards step’ stuff from above. I’ve noticed that the 33ft depth in the oxygen chamber makes me more relaxed but also more tired, which makes it harder to work. So after next week, when I should have a better idea whether hyperbaric oxygen therapy is beneficial for me, I’ll need to find a balance between the desired effects of the treatment with my need to remain functional. This week has been a high pain week, but I still think that’s due to circumstance – stress and pressure – rather than the treatment being less effective. Next week should be less stressful as I have a holiday starting at the end of it, so I should be able to rule out circumstantial factors at least.
Day 15 – Drowsiness!
Yesterday (a Sunday) was truly dreadful day of Fibromyalgia pain, I could barely do anything. I think that’s the end result of two weeks of heightened stress. Today it’s more manageable. In the HBO Chamber, I got really drowsy today! Partly due to it being a much earlier start (I had to be up by 7:15am, only possible if my wife brings me breakfast, coffee and medication) so I was already tired. It was really relaxing and I got pretty drowsy in the chamber. I’m still at 33ft I believe so the extra depth compared to the 24ft I’ve been mostly on to date does increase the effect. I don’t work most Mondays so I’ll see if today is back to being a 3-doses day or another 4-doses day after yesterday’s pain levels.
Day 16-17 Regression
I haven’t had the strength to update this post the last few days. The reason being a regression in sleep quality, in ability to concentrate and a huge rise in pain levels. This seems to correlate with when they took me to 33ft. Having spoken with the centre, they said that they would take me back to 24ft depth for the next oxygen therapy session. They also observed that often Fibromyalgia patients found 24ft more beneficial than 33ft but they kind of had to try with me. For MS Patients, the deeper the better but strangely Fibro sufferer don’t often find this. So it was resolved that for all future treatments I would be at 24ft depth. Let’s see how that goes.
Day 18 – Better
I’m at the end of my physical resources. I should have taken this week off work as I’ve not really been functioning well at all. However, today’s 24ft depth treatment left me feeling relaxed but not dopey. Due to the oddness of timing, I’ll be doing my day 19 and 20 when I get back from a week’s holiday. After that I’ll be doing one a week to see if benefit can be retained. Even if sleep quality is improved a little bit, it’s worth it.
Day 19 and 20
Glad to be back at 24ft. I was more relaxed and slept better as a result of this week’s treatment. I only wish I had had fewer days at 33ft (a depth that seems to suit ME/MS patients more) as I might have had a bigger, longer lasting effect. I’m now going to go once/week on a Wednesday evening, so the next couple of weeks will be interesting. I’ll only update this post again if I have something new to add.
Hyperbaric Oxygen Therapy Resources / Explanations
I will continue my honest, unbiassed diary of using HBOT. But know that my experience may not be yours (whether mine is positive/negative may not be what happens to you!).
- Good Ol’ Wikipedia on the Subject
- For balance: Conditions not proven (in 2013) to not be helped by HBOT
Where Are Hyperbaric Oxygen Chambers in the UK?
There is a really helpful map here which is how I found my local one. The site asks to use your location data so that the map can focus on chambers near you, so you may be asked to ‘allow location data’ to be shared.
TL;DR Hyperbaric Oxygen Therapy and Fibromyalgia
I definitely have found a benefit in using HBO. Some people say it has changed their life. I’m not one of those people. However I have found the Chambers help me to de-stress, relax and reduce my pain medication intake by about 10% overall. That alone makes it worthwhile. I’ll take any small improvements over nothing. And as I still need to continue working with Fibromyalgia I need any small changes to cope.
I hope this diary is helpful for anyone else considering Oxygen Therapy. If you have questions please use the comments!
Whether due to a downturn in health and an upturn in pain levels, I have had to stop HBO as it was no longer coping with my pain levels. I am however now coming off most of my medication, and in the interest of being objective and only doing one major thing at once, I won’t be picking up HBO again for a while, until I learn where I am actually at pain-wise.